Wouldn’t you?

If you were to pay someone’s wages for two or three years, you’d expect them to achieve something, wouldn’t you?

If you were a board discussing different projects, with different board members in favour of different projects then you’d expect reasoned debate without personal attacks or breaking into cheering and jeering, wouldn’t you?

If you offered the option to spend some money now knowing that it would save more over the long term, you would expect it to be taken up wouldn’t you?

If you were given advice by an expert you’d take it on board wouldn’t you?

Maybe I’m too idealistic, or even naive. More likely, I’m too frustrated.

Frustrated that short-term political gains and short-termism in general.

We’re faced with a time when someone fuelled by partisanship (and alcohol) can run onto a football pitch, attack someone, and wind up in jail.

At the same time, those whose job is to provide leadership and set an example to the country have been fighting, positioning, and showing no respect to their peers or their position.

Short termism has such a drastic knock on for the future.

We asked our CCG to refer our son for assessment to the FASD clinic in Surrey. Their response was that it would not add any benefit for him at the moment, so our application for an individual funding request was declined.

So we’re left with no professionals with an understanding of FASD, which means that his current and future needs will be assessed by those without the relevant knowledge, which will mean that any treatment could be inappropriate (he’s already had to endure trial runs of ADHD meds which set him back a lot), and nobody is anticipating what he might need in the future/the best way to support him.

By applying the wrong support techniques or medication, additional issues could arise which will take up more of professionals’ time and resources.

It also leaves us, his parents, who are the true experts in our son (and in FASD when it comes to all those we’re dealing with) exasperated and feeling ignored.

All this because a relatively small amount of funding could not be made available for something which is not available in our county.

I don’t imagine we are alone in this.

All the misdiagnosis, lack of forward planning by service providers (medical, educational, social) will cost our country in the long run – costs that could be avoided with a bit of forethought, planning and long-term perspective.

Costs that could well have been easier to meet had we not had 2-3 years of time where our politicians have argued incessantly rather than implemented policies that could prevent suffering for our children.


Stepping up…

Regular readers of this blog (if there are such things!) will know that our son has fetal alcohol syndrome (FAS) and that I have been dealing with depression.

Good news – one of those is now being managed!

Bad news – it’s my depression rather than my son’s FAS.

My mind is in a better place than it has been in a long time. That’s great, but what it brings with it is a realisation that whilst I have been dealing with my struggles I’ve been blind to the reality of every day life for my wife and son.

He is fighting every day to keep it together. He’s being supported by ADHD medication and melatonin, but his frustration is all too well evident.

Seeing his struggles makes my wife feel helpless. Re-reading reports and recommendations from professionals from before we adopted him makes her angry.

Those reports suggest that he should have continuous monitoring to see how FAS will affect him.

They state that, without the right support, the impact on him and our family could be significant to say the least – causing strained relationships and a child who needs so much more support from the system he emerged from.

That my wife has been dealing with all of this by herself fills me with immense shame. At evenings and on weekends I see his flare ups, but each day I escape to work.

It’s all too much for one person to deal with. Heck, it’s too much for five or six people to deal with, but it’s all too common amongst those affected by FAS and FASDs (fetal alcohol spectrum disorders, of which FAS is one).

In our son’s case, he has now been treated with three types of ADHD meds. Apparently it’s a game of trial and error until the right ones are found.

In other words, we’re experimenting with our son’s mental and emotional health. But this is apparently what we have to do. His paediatrician suggested that she knew the first two types of meds wouldn’t be right for him, but apparently had to prescribe them to prove that before being able to try the third.

I can only surmise that the meds don’t work due to our son having FAS. It’s an imitating condition, so it’s entirely possible that the ADHD symptoms are not ADHD after all, and that no ADHD meds will help him cope in a world which challenges him so much.

Up to now the meds had helped him “cope” at school – supporting him to focus and respond appropriately to instructions. The fallout came at home – an eruption of all the anguish stored up during the day.

On the new meds, that’s not the case – he’s struggling to cope at school as well as at home. His frustration can come out as aggression, which unless managed could lead him to losing friends.

That is not the life I want for my son or my family.

We have submitted a request for an EHCP (which his school has not despite his ADHD and sensory processing disorder diagnoses) and are asking for more help. Help from his placing authority, our adoption agency, and our local authority.

We’re hoping that the post adoption teams will be able to help our family.

Any degree of respite, support and understanding, and extra weight in our corner would be truly appreciated.

They say it takes a village to raise a child, but at the moment I’d accept a street. We need more people to understand FAS so we can get to the root of our boy’s frustrations.

One step at a time is just not enough anymore.

Now my fight is over I will fight for my son with every fibre of my being. It is time for me to step up. If you try to fob me off then watch out!

Is this the real life or is it just FASD?

Today (the 9th day of the 9th month, representing the nine months of pregnancy) is “International FASD Day”, so I felt compelled to write something about FASD (fetal alcohol spectrum disorder).

Each International FASD day brings with it a mix of feelings:

  • Love of our son who has to live every day fighting to understand and to be understood
  • Hope that the message is getting through to the mainstream that the difficulties our children have are entirely preventable and don’t need to be repeated in generations to come.
  • Despair that a lack of understanding from professionals and press allows misinformation to precipitate.
  • Frustration that the message “no alcohol, no risk” is being interpreted as a nanny state message that restricts freedom of choice, rather than as a recognition that nobody can predict how alcohol will affect an individual or the offspring growing inside them, so it’s safest to remove all risk rather than using guesswork.

The hardest thing about having a child with FASD is the second guessing.

As well as a diagnosis of FAS (fetal alcohol syndrome, one of the disorders on the FASD spectrum), our son has a diagnosis of sensory processing disorder (SPD) and another of attention deficit hyperactivity disorder (ADHD).

As I see it, when looking at his SPD and ADHD:

  • They might have occurred regardless of alcohol intake whilst he was in the womb;
  • They are a direct result of pre natal alcohol exposure; or
  • Some combination of the above.

The problem is that we will never know which is the case, which complicates the approach we should use to support our son and mitigate these presentations.

428 conditions co-occur with FASD – who knows how many more we’ll encounter as we support our son?

He’s had a diagnosis of FAS since he was 2 years old, but it’s only now that the ADHD and SPD are coming through that professionals are taking notice – providing medication for ADHD (which seems to be still in the stressful, frustrating trial and error stage), and extra resources for the SPD.

The frustrating thing is that we’ve been asking for this help for ages, but lack of knowledge/understanding of FASD has meant that it’s only when the co-occurring conditions come through that we’ve got the help we’ve been pleading for.

It’s simply not good enough.

FASD is entirely avoidable and preventable. It’s also very real, and out there – the conservative estimates of 2% of babies are born with FASD are frankly 2% too many.

Families, friends, support networks, and most importantly, those with FASD need more.

We need more support and awareness of FASD from the professionals we ask for help.

We also need to support the decisions of women whilst providing more education about the possible effects of alcohol on an unborn child. Stigmatising anyone is counter productive.

We need to recognise that past advice (e.g. drinking stout for iron) was based on evidence available at the time and is outdated, whilst not laying the blame at anyone’s door.

There may not be enough evidence around the risk of consuming small amounts of alcohol whilst pregnant, but is it really worth the risk? Quite simply, no alcohol = no risk of FASD.

If enough is done then we could all but eradicate FASD for future generations, and provide vital support for those already affected.

Alphabet soup

Today our son was officially diagnosed with ADHD (attention deficit hyperactivity disorder).

Four more letters to go with his other diagnoses of SPD (sensory processing disorder) and FAS (fetal alcohol syndrome).

We’re also expecting him to be assessed for ASD (autism spectrum disorder), though the outcome of that is uncertain.

Each of these diagnoses tells a story about our son, how he perceives the world, and how the world perceives him:

  • Why won’t he sit still?
  • Why won’t he listen?
  • Why won’t he do as he’s asked?
  • Why won’t he pay attention?
  • Why is he making that noise?

They also bring with them perceptions/questions/judgements from the outside world about us as parents:

  • Did my wife really drink whilst pregnant?
  • Is she an alcoholic?
  • Can’t we control our own child?
  • Why do we let him be so naughty?
  • Why do we let him play on his tablet?
  • Why are we so strict?
  • Why do they keep repeating themselves?

None of those questions should matter. Most relate to the past – alcohol in utero has caused our son to have organic, irreversible brain damage. Nothing can take that away.

That same brain damage means that when it looks like our son won’t do something, it’s more likely that he can’t do it – quite simply, he doesn’t function in a neurotypical way.

He tries though. He tries so hard. That’s what makes it so difficult if he doesn’t succeed.

Don’t get me wrong – sometimes, in fact often, he succeeds – it is that which masks his brain from the outside world.

Imagine being asked to drive a car (which involves coordination, observation and listening amongst other skills) when you’ve broken your leg.

Ridiculous, right? But you were able to drive yesterday, so it’s expected you do so today.

That’s how it is for our son. Except instead of a visible, easy to understand, disability; his is hidden, and complex.

That’s where the alphabet soup comes in. Not FAS, since it seems so few people are aware of it, and far fewer actually understand it (most of those being carers of children on the spectrum). Possibly SPD, since there are ways to help people to understand how that impacts the way he experiences the world. Moreso ADHD – particularly since it is becoming more widely recognised as a “thing”, rather than just a label for “naughty” children. At least people will have heard of it and are more geared up to support it.

Time will tell whether the alphabet soup is a help or a hindrance. In the meantime, I’m off to a search engine or a book store to understand more about how I can help my son.

The stranger in my pocket

There’s a stranger in my pocket.

More specifically, there’s a photo of a stranger in my wallet.

It’s someone I never got to meet, yet they now mean the world to me.

That photo is of my son when he was one or two years old.

I never knew him then – it wasn’t until he was three that we met him.

The boy in that picture was happy, tenacious and loving, and those around him didn’t have a care in the world.

Everyone was unaware of, or in denial about the challenges he might face as he got older.

Four or five years on, he is still happy, tenacious and loving. Everyone he meets falls in love with him at first sight.

He’s also fighting a battle – to function like his peers, to keep his frustrations in check, and to operate in a world not designed for him.

He is amazing.

He does so well despite the organic brain damage caused by alcohol in utero.

We’ve known for a while that he experiences the world differently to others. Whether it’s making noises to cope with situations; pushing, pulling or prodding too hard; shutting himself off from external stimuli; struggling to follow instructions; or getting stuck in a loop (or vicious circle) and not being able to get out of it.

I’ll never be able to fully comprehend what he has to do to get through each day, but at least now there is some light.

He was recently assessed for, and diagnosed with, sensory processing disorder, and we’ve now added some tools to that ever expanding belt to help him cope, and to help bend the world more into the shape he needs.

Some of those were remarkably simple:

  • A kids table to sit at for meals, craft and work – having his feet on the floor has helped him be grounded;
  • A “wobble cushion” that helps him to sit still;
  • Ear defenders for when it’s just too noisy

They’re all helping in their own way.

Slowly but surely, we’re learning more how to help our son cope in this big, strange world that is not set up to accommodate him.

Now we need to educate those around him. If we can manage that then the future is bright for our son. Easier said than done though, but we will persevere.

Anything is worth it for the stranger in my pocket.

Settling down…

It’s been quite a while since I wrote on here.

Correction – it’s been ages since I’ve published anything on here – I have two blogs in draft that I didn’t get round to finishing: one on FASD (originally written for FASD awareness Day on 9 September!); and one on adoption parties (which I started drafting after watching the series on Channel 4 towards the end of last year). I will finish those at some point!

In that time, I’ve started working in a different office, had a fantastic opportunity to support one of our clients more closely, and we’ve moved into our new home.

Our move was unsettling for our son at first – new home, new school, new city – but he has operated amazingly.

As a family we’re much more settled than where we lived before – a function of having our support network on our doorstep rather than an hour and a half away, my new found happiness with work, and space to talk things through when the going has been tough.

For the first time in ages this feels like our forever home.

Thank you

To my son’s teachers, TAs and everyone else involved in his school for the last 18 months.

Thank you.

Thank you for helping him be happy.

Thank you for always encouraging him to enjoy himself and do his best.

Thank you for listening to our concerns and showing us that we are all a team.

Thank you for understanding him.

Thank you for giving him a safe environment to grow from a baby into a boy.

Thank you for giving him the best possible start in his education.

Thank you for reassuring us that we are helping his education in the right way outside of school.

Thank you for making him star of the week, showing him that politeness goes a long way.

Thank you for challenging him when he needed to be and for supporting him when he struggled.

Thank you for always having a smile for him.

There are so many other things I could add, and no amount of words could ever express them more than just “THANK YOU” for everything.